Friday, January 29, 2010

On January 21 Natalie went to see her favorite Neurologist, Dr Franz. Really, Natalie probably would not call any doctor a "favorite" but if I had to pick one it would probably be him! I like that he always seems to be truthful yet definitely puts the focus on the positives! He also takes the time to really listen to parents and seems to value and consider their input. On this journey, I have learned that this is truly a rarity among pediatric specialists! Del took Natalie to this appointment so I did not get this information firsthand but it seems that Dr Franz gave Natalie a GREAT report at this visit.
To summarize:
-Natalie looks to him to be getting close to walking. He took notice of her much improved balance since her previous visit.
-She had an EEG after her previous visit and this was negative for seizures. She still is at increased risk for seizures due to her previous brain bleed and resulting damage, but the older she gets without having any seizures the better the odds that she won't develop a seizure disorder.
-He believes that she is definitely trying to communicate with us in words but is just not able to get them out correctly and consistently. Natalie apparently became very talkative during her appointment and told him one of her long stories! Dr Franz thinks that the communication device that Natalie will soon be evaluated for will be a great thing to improve her ability to communicate. It is clear that her receptive language skills are much ahead of her expressive language skills. (Not sure he said that last part exactly but this is pretty clear if you spend any time with her). I will do a separate post about communication soon.
-He supports getting another opinion on Natalie's vision and affirmed my gut feeling that vision therapy is probably not worth the time and money at this time. Natalie has had a prescription for glasses since this fall from her Ophthalmologist but no glasses yet. A second opinion from a developmental Optometrist was to hold off on the glasses for now and do vision therapy (which they do in their office for a rather hefty fee and not covered by insurance). So in order to get a 3rd tie breaker opinion, we are going to be seeing an Ophthalmologist in Cincinnati.

I feel like I am forgetting something so if I am, and I remember it, I will edit later!

Wednesday, January 27, 2010

On Sunday night Natalie fell on her chin on Cook's hardwood floor and split her chin open (again). You may remember she did this back in May and had to have several stitches. This time after a fun (not really) trip to the ER, she ended up with 10 stitches. It did not seem to hurt much but she was really mad about being in the ER. Even weighing her and taking her blood pressure really ticked her off. I didn't take any pictures at the hospital but here she is happy to be back at Cook's house at 11:30 Sunday night. Note the mismatched clothing and hospital bracelet.

The rest of her week was going along great until today, when approximately 45 minutes after dropping her off at school, I got a call to come pick Natalie up because she threw up in her classroom and had a 99.3 temp. I got her home and she seemed happy to be home and crawled off to play. She ate a great lunch and then posed for a few pictures:

Today, right after these pictures were taken, she was standing up by the coffee table, lost her balance and fell hitting her mouth on the coffee table on the way down. Ugh. She cried pretty hard but there was minimal blood in her mouth and all of her teeth seem intact. Luckily, she must have just barely missed hitting her chin. Hoping for no more injuries or sickness this week!

Friday, January 15, 2010

I have been thinking a lot lately about my blog reading habits and about what I want this blog to be. Mainly, I've realized that the blogs that I enjoy reading, for the most part, combine several common elements:
-documentation of everyday accomplishments/special events
-reactions life events and/or challenges
-interesting or funny stories about everyday life

Up until now I don't feel that this blog has really met my own "good blog" requirements so I plan to change that. No one expects to have a child with a disability but the reality is that it happens all the time and it involves major lifestyle adjustments and a lot of emotion, both good and bad. Over the last 3 years I have benefitted immeasurably by reading other blogs about kids with challenges similar to Natalie's. This includes the stories of other micropreemies and kids with Cerebral Palsy (CP) and other disabilities. It has made me feel less alone and given me a lot of hope for Natalie's future. I want to be honest about Natalie's disability and how it affects her. Also, I'd like to educate family, friends and other blog readers a bit more about CP. But don't worry - I still plan to celebrate her accomplishments and post tons of pictures of my sweet girl!
So look forward to more posts about Natalie's therapies and therapy goals, equipment, and general development. I'd love reader comments on topics that you would like me to cover in future posts or just questions that you have about Natalie and her development. Don't be afraid to ask anything you want to know!

Thanks to friends Krystal and Bob, Natalie had a fun New Year's Eve. She LOVED playing the drums in their basement! All that work making music really tires a 3 year old out though and she crashed on their living room floor around 11pm!

About Me

I am mom to Natalie Elizabeth, a strong and feisty 8 year old born, along with her twin brother Andrew John, nearly 17 weeks early on 9/2/06. Andrew passed away on 9/4/06 and Natalie spent 110 days in the NICU. As a result of her premature birth she has Cerebral Palsy. Despite her challenges, she is constantly doing new and amazing things and surprising everyone!